Sunday, September 5, 2010

Virtual Book Tour: How To Be Sick by Toni Bernhard

I am honored to host this virtual book tour for author Toni Bernhard, who has written a wonderful book called, "How To Be Sick." Toni has been a kind and thoughtful guide for me as I navigate my own journey of chronic illness, and her book is a major gift to us all. She lives what she writes, and I am grateful she is sharing her hard-won wisdom with us. This book fills a void in the chronic illness literature genre, and is a much-needed resource for those who are ill and those who love them!

Toni: I fell ill on a trip to Paris in 2001 with what the doctors initially thought was an acute viral infection, but I never recovered. After six months, I was given the diagnosis of ME/CFS (Myalgic Encephomyalitis/Chronic Fatigue Syndrome), although since that time, several other acronyms have been used to describe my illness, such as VICD (Viral Induced Central Nervous System Dysfunction) – a working theory of an Infectious Disease doctor from Stanford. I’m convinced that ME/CFS encompasses several discrete illnesses and that until the medical community recognizes this, little progress will be made in finding a cause or a cure.

Q: How did you come to write the book?

Toni: I was completely unprepared for such a drastic change in my life. I was a law professor. I liked to travel to see my family. I liked to go on meditation retreats. I was active in the life of a young boy as his CASA (Court-Appointed Special Advocate). Suddenly, I couldn’t do any of those things. Despite years of Buddhist practice before I got sick, I fell into alternating states of denial, anger, self-blame, and even despair. We live in a culture that worships at the altar of wellness. It’s okay to get sick, but then you’re supposed to get better. Everyone expected that of me and I expected that of myself. Every night I went to bed expecting to wake up feeling like my old self even though for months and then years it had not been the case. So, in addition to my physical suffering I was suffering a lot in the mind. It took 5-6 years to find my way back to the Buddha’s teachings on suffering and to the many practices that can help alleviate these painful thoughts and emotions. Once I began to change my relationship to chronic illness, I wanted to share it with others, so I wrote the book.

Q: How has Buddhism helped you cope with chronic illness?

Toni: First, it’s helped me understand my suffering. Second, it’s helped me to work with the stressful thoughts and painful emotions that accompany chronic illness and chronic pain. I think of the Buddha the way the Dalai Lama does – as a great psychologist. He had a keen understanding of how the mind works. Everyone’s life has its unique mixture of joy and suffering. The Buddha focused on suffering because it’s a truth about life that we tend to ignore or turn away from. It comes from the Pali word, dukkha which really means dissatisfaction with the circumstances of our life. In the first noble truth, the Buddha simply stated that, despite our best efforts to avoid it, everyone has their share of dukkha – both physical and mental – meaning we’re all dissatisfied in some way with our life. For one thing, we’re in bodies and bodies get injured and sick and old. Dukkha for me has included this illness. For others it could be frustration on the job, tension in a relationship, a bad living situation, even frustration over not being able to find your car keys!

It may sound counterintuitive, but when I started to really take in this first noble truth, I felt a great sense of relief. Finally, someone was describing life in a way that fit a good portion of my experience. What a relief to know it wasn’t just me or just my life!

So, we’re all dissatisfied with some of the circumstances of our life – unless we’re enlightened, of course! In fact, that’s my own personal definition of enlightenment: not being dissatisfied with the circumstances of my life. Just imagine for a moment not being dissatisfied in any way with how your life is going – opening your heart and mind to the unpleasant stuff too; just giving up all longing for your life to be other than it is. Just for a moment, drop all that craving, all that desire. It’s a relief, isn’t it? Those “wants/don’t wants” (as I like to refer to longing or craving) will almost immediately pop back into your mind, but it’s a taste of freedom, a taste that lingers.

The bottom line is: We have the life we’ve got – with its unique configuration of joy and suffering. We can’t always get rid of bodily suffering – the Buddha experienced great bodily pain at times. But we need not add mental suffering to that bodily suffering. We can do something about painful emotions, such as worry, fear, anger, resentment. We can do something about this constant craving for things to be other than they are in our lives. We can do something about stressful thoughts that, when left unquestioned, can lead us to spin elaborate stories we tell ourselves about our life and our future – stories that have little basis in reality.

Q: How does the book address this mental suffering?

Toni: That’s the heart of the book – specific practices that help loosen the tight-fisted grip that painful mental states have on us. One way to do this is to bring them to awareness (sometimes called mindfulness), to expose them to the light where we can see them for what they really are – impermanent for one thing (thank goodness), and also not inherently a fixed part of our identity. We are not just our pain. We are not just our illness.

The book contains several practices, some Buddhist, some not, that help us question the validity of our stressful thoughts – those stories we spin about our lives – that have little basis in fact (“I’ve ruined my partner’s life,” “My friends don’t care about me.”). I’ve been helped tremendously here by Byron Katie’s technique for questioning the validity of our thoughts (there’s a chapter in the book devoted to her work) and also by a couple of Zen practices that keep me questioning my assumptions. “Am I Sure?” I’m always asking (thanks to Thich Naht Hanh). Am I sure the doctor I saw doesn’t care about me? Maybe he’s terribly overbooked today. Am I sure my friend has lost interest in me? Maybe she has problems of her own.

And the book contains many practices to help loosen the grip of painful emotions. Since emotions manifest in the body, this can even help alleviate our physical symptoms. One way to loosen their grip is to consciously cultivate calm and gentle mind states such as loving- kindness, compassion (both of these for ourselves first), and equanimity.

Some Buddhist scholars even equate equanimity with enlightenment, saying that if we can be calmly present with both our pleasant and unpleasant experiences, riding the waves of life’s ups and downs without the constant craving for things to be other than they are, we’ll know complete peace. And then, as the Thai forest monk, Ajahn Chah liked to say: “Our troubles with the world will have come to an end.” (On this score, I’m a work in progress!)

Q: What challenges do you specifically address in the book?

Toni: Whether chronically ill or otherwise disabled, we face so many sudden and unexpected challenges. Here are some I talk about in the book: coping with the relentlessness of symptoms and with the disappointment of failed treatments; learning not to blame ourselves for being sick; overcoming fear about the future; coming to terms with a life of relative isolation; handling being misunderstood or ignored by family or friends; dealing with cursory or dismissive treatment from doctors or other medical people; and, for a spouse, partner, or other caregiver, adapting to so many unexpected life changes.

Q: Do you have to be a Buddhist to benefit from the book?

Toni: No. The book is non-parochial. Many people, and I’m one of them, don’t consider Buddhism to be a religion in the traditional sense. It’s a practical path; it’s about how to live life day-to-day. The practices in the book will work for anyone, even for (as some reviewers have pointed out) people who are in good health!

10 comments:

Thanks so much for this wonderful interview, Terri and Toni. Truly words to live by. I'm bummed I am unable to read right now as I think I would devour this book in one sitting if I could. :) I still plan to buy it though, and hopefully skim through it little by little. No doubt the words will be comforting and uplifting, especially coming from such a wise and supportive friend within the ME/CFS community.

Hi Laurel. I wish that the publisher had plans for an audiobook, but despite my inquiring several times, there seem to be no plans at this time. It's a big change for them that they're going to have it available as an e-book!

The good news is that the chapters are pretty short and divided into headings (I had to write it that way because, like you, I have trouble reading).

What a fantastic book preview -- I can't wait to read it. I really enjoyed the Q&A and it seems like something I really need right now. I will buy a copy as soon as I can. Learning to accept and find joy in "what is" can be such a struggle, but so worthwhile. I'm really looking forward to reading this. Thank you for spending so much of your precious energy to write this, Toni!

Thanks so much for your comments. It feels so good to know that you understand how much energy and sacrifice (the latter is a strong word, but it applies) it took to write the book. I hope with all my heart that you find it helpful.

I enjoyed this interview very much. Much thanks to Terri for posting it, and of course to Toni for writing the book. Your journey reminds me much of my own journey with yoga philosophy, where I'd lose much equanimity and acceptance every time I had a relapse, and gradually regain it as I accepted the reality of being less able than I had been. I'm looking forward to reading the book.

And what you said about yoga philosophy applies to my own work with the practices in the book. The operative word is "practice." I go back to the book all the time. My husband likes to tease me that I'm being helped by my own book! Thanks for your support. It's so wonderful to be able to communicate with people who understand chronic illness.

Thank you so much for this interview, i really enjoyed it and i cannot wait to get my hands on this book, i really think it will help me so much with my inner demons about being sick, something that i really struggle with. I am looking forward to finding a way to deal much more positively with them! Thank you x

Thanks for your note about the interview. Yes, there are so many inner demons we have to deal with. For me the biggest one was learning not to blame myself for being sick and for not being able to live the life I had all planned out for myself. I talk a lot about that little demon in my book!

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About Me

I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help